Well, I can answer this one from experience. My living T13 child is now almost 9 yrs. If you've seen the statistics, then you also may have viewed the many living survivors off the Livingwithtrisomy13.org website.
I am mom to Natalia and site owner. We did not know my child dx before birth as I opted not to have the AFP and my child's abnormalities did not present themselves in the few ultrasounds we had. But my child did come with many.
Extra digits, Cataracts, cleft lip/palate, enlarged kidney, both ASD and VSD and a complete malrotation and more... We were shocked and surprised at birth to say the least!
They told us at birth these kids don't survive, and it would be only a matter of time. They also said they normally did not treat these kids. Well that didn't fly with me, if any of my other kids needed some sort of medical intervention, they would get it, and I already loved this precious child. So with that, we looked at each medical issue and dealt with it in its proper time.
The first year was tough... everyone wants to tell you your child will not make it, they will die... and maybe she could have, but I was insistent on doing what we could to keep her comfortable. That did include several surgeries...Covered by our INS and the state aid that special needs children receive. You can contact me if you like and I can tell you more. Has it always been easy? Well, there have been moments or days when I had tears.. but I have those with my normal kids. Frankly at this point, she is easier than my three teenagers... :)
No one knows how long or not your child will live. NO ONE.. they can guess, they can give you more statistics...but ultimately these kids chart their own course. Each are as unique as you and I.
Its a very personal choice. What I can tell you is I've heard many stories from families who have carried to term, and have also lost their child, as well as those who have living children. I think its like 98 or 99% would do it all over again. As difficult it is, ( at times) they would do it all over again. That says something for the power of love.
There are many resources off the LWT13 site, as well as the NILMDTS photography that captures beautiful moments with these kids. Be sure to view the many Prenatal support resources, also the considering abortion.
I do suggest, as difficult as it is, research all decisions.
View the children, living and Treasured Memories, those who passed early off the LWT13 site.
View an abortion at abortionno.org (Warning - this is the reality of termination-short video, but heart wrenching.) When you are fully informed you will know what is best for you and your family.
There is also a message board off the LWT13 site where you can talk to many families who offer support. Presently we do have 4+ prenatal families ...
You will be in our prayers.
ThereseAnn, mom to Natalia with full trisomy 13, almost 9 yrs.